Tuesday, January 29, 2013

A Love/Hate Relationship

The nurses gave us this picture today.  Isn't he beautiful!  They said during his "cluster care" - when they change his diaper, move him around for a new position and start his feeding - that he was just looking around and very active.  They had raised the top part of his incubator to move him, and when they put it down he started crying.  So they raised it up again and interacted with him.  I absolutely love the nurses that care for our little boy!

At the same time, I hate the fact that they are there to see these moments and that I miss them because I can't be there all the time.  Yet, I could be there all the time.  Visiting hours are anytime during the day and night, except for 6:30 to 8 am and 6:30 to 8 pm.  "Why don't I spend all my day there?", I often ask myself, then feel the guilt wash over me.  Don't get me wrong . . . I spend a lot of time at the hospital each day.  I want to be there all the time, but hate that I have to be there at all.  In order to take care of my health (mental health specifically) I have had to learn to accept a balance.

You see I love going to the hospital and I hate going to the hospital.  I LOVE seeing my beautiful baby.  That  is obviously a given.  But I hate seeing him cry when I can't hold him, and sometimes even touch him to give him comfort.  I hate that some nurses will allow me to lay my hands on him for comfort, while sometimes they appear to think I'm upsetting him more.  I hate that I  have to wonder if touching him is upsetting or comforting.  I obviously want to do what is best for him - both Tyler and I have stayed at home, because we were ill, to keep him from exposure to possible infections, and we are constantly watching his vital signs for distress.  I love that I am his mother, and hate that I have to get permission to touch him.  I love that the nurses are so helpful.  I hate that there is so little time I have been able to spend with my little guy, unmonitored.  I love being informed of his progress, yet hate feeling so stupid as numbers and terms come at me daily and I have to have them repeated over and over.

Sometimes I feel so many different emotions within such a short period of time, it becomes quite overwhelming!  Hate is such a strong word, and while I do hate many of the circumstances and conflicting emotions that I feel lately, the feeling that encompasses them all is an overwhelming sense of GRATITUDE!   Thanks to the nurses and doctors who care for Marshall.  Thanks to ALL who have offered support and love and encouragement.  Thanks to our amazing family!  Thanks for my most amazing husband who has to deal with all these stresses, and me the emotional roller-coaster, and work at the same time!  He is so wonderful!  And most of all thanks for my Marshall! A gift from God.  And for his journey, which has helped me draw closer to my Savior and learn a great deal of compassion and empathy for others, all the while feeling enfolded in the arms of His love!

Monday, January 28, 2013

Two-Hour Adventure

I did it! On Tuesday I got off the ventilator and I breathed on my own! Well, it was mostly on my own - I had oxygen running up into my nose. It made me sneeze a lot. That's why I pulled it out. Once it was out I could finally relax, free from all tubes and hoses. But it didn't last long. Soon the machine on the wall was beeping like crazy and my mom noticed that I had taken the liberty of making myself comfortable by removing the tube. So it was back to the plastic up my nose for me.

Are any of you wondering why I wrote "breathed" instead of "breathe," and "it was" rather than "it is?" That's because I'm back on the ventilator. In fact, I was only off it for two hours before my little lungs just couldn't keep up. If you had looked at me, though, you would never have guessed that I was struggling. I was taking deep breaths in and out, and the monitor on the wall showed I had enough oxygen in my blood. But there's no fooling those clever nurses. They kept pricking my heels and drawing blood to find out just how well (or not well) a job my lungs were doing. It turns out that lungs do a lot more than just oxygenate the blood! They've got to exchange oxygen and the carbon dioxide. They also help regulate my pH balance. So although it seemed my body was working hard to inhale and exhale, the blood from my heels revealed a build-up of CO2 and a pH imbalance.

Even though I had to go back on the ventilator only two short hours after being free, I made sure to take advantage of the opportunity. First I posed for some pictures without a big white mask over my mouth. Then I sucked on a little pacifier (it was supposed to be the smallest one they had, but it was still bigger than my head!) Finally, I held my mommy really close. She said it felt like she was only holding a little blanket because I weighed so little. But to me it reminded me of heaven. Maybe you've forgotten, but I still remember the warmth and the peace and the joy. And that's just how I felt when my mommy held me close in her secure arms and gentle hands. The only difference between the two experiences is that in heave , I didn't have a feeding tube right in the middle of my mouth! My dad said it's probably a bit like when you swallow a spaghetti noodle that gets stuck halfway down, but I told my dad it would be inappropriate to go into details about that.

So now I'm back on the ventilator. I'm focusing on growing bigger and preparing my lungs for next time. The doctor said it wasn't a problem that it didn't work - my lungs just weren't quite ready. He wants to wait a week or two and try again. Even though it did hurt a bit to be re-intubated, it was absolutely worth it. It gave me a chance to show everyone what my mouth looks like (though the mask that is glued to my face makes my skin red and wrinkly), but best of all, it let me be closer to my mommy than ever before. I think it also gave extra hope to some people that just won't stop worrying...*cough* dad *cough*.

My mom and dad also wanted me to help them express how loved we all feel by your kind words of support, your comforting expressions of love, and the miracles powered by your prayers. I also hope you'll pray for my Grammy Stout, who I haven't seen since my first week in the hospital. She's always wearing herself out taking care of other people and praying for me, and has been sick for quite sometime. Have I mentioned that I have the four best grandparents ever?


Monday, January 21, 2013

"This is good!"

I couldn't wait to write to you today, just like I couldn't wait for my parents to come visit this morning. All of us in the NICU had a wonderful surprise for them when they got here. As soon as they walked in my doctor pointed at me and said, "This is good" so loud that even I jumped. It took mommy and daddy a second to realize what he was saying, and by that time the doctor had already finished explaining. I bet you're curious, aren't you?

Well, let me back up just a bit. For the last five or six days I've been getting a dose of steroids every twelve hours. I already told you how strange it makes me feel, but everyone said it would be worth it. I figured I would just have to trust them. Some of those days were pretty hard and I cried a lot, but my parents seemed optimistic (especially when the doctor didn't write any orders at all on Saturday). The nurses were turning down the settings on the ventilator a bit at a time, but over the weekend they just seemed to level off.

By the time Sunday rolled around, the ventilator hadn't been turned down much lately, and I was getting 70% oxygen. I didn't like how I was feeling either. I just couldn't lie still or stop crying. And then my parents came to visit. Boy was I glad to see them. Especially my mom. She came right over to me and put her hands around me and sang to me. I felt warm and secure in her hands, and couldn't help but feel completely at peace when she sang beautiful songs to me. At one point she stopped singing until I opened my eyes and looked up at her. She got the message and kept singing. Within the couple of hours that they were there, I was able to lie still, suck on my tubes (because they won't give me a pacifier), and fall asleep. And it turns out that the nurses turned down the oxygen all the way to 40% by the time my parents left.

I don't remember them leaving, but I had a great night and an even better morning. When my parents finally got there and heard the exclamation from the doctor, they saw what we were all so excited about. The settings on the ventilator had been turned down lower than ever before. If you're curious, the mean pressure setting started at around 16 or 17 last month, it's now half of that. The amplitude setting (which has to do with the frequency of my breaths) is also much lower than it has ever been. The doctor told us that he hopes to extubate me (that means get me off the ventilator) this week, and maybe even as soon as tomorrow!

My dad told me he can't wait to see me without a big mask on my face, but I told him I might still wear it to keep the feeding tube in place. Though I'm not sure how much it helps since I can't help but pull out my tubes when I'm on steroids!

This is all really exciting, but I'm a bit nervous. If things don't work out, I'll just have to go back on the ventilator until my lungs are strong enough. It's just scary when one second you can breathe fine and the next you're turning blue. That's why the nurses suggested that my parents come visit me only after the job is done. Please pray that I'll be ready when the time comes and that I can have lots of help to breathe on my own. Isn't that a funny thought? Having help to do something on your own? But were not my little lungs created by Someone just like the ventilator was? And don't I rely on the one to help just as I rely on the other? Anyway, I know that with your prayers and the expertise of the doctors and nurses, things will work out just fine.


Thursday, January 17, 2013

Steroids and Chocolate

Four weeks ago I was born weighing fourteen ounces. That's less than a large grapefruit! Well, in only four weeks I made it to one pound eight ounces. My dad had his phone calculator out the other day when he came to visit. He told me if he gained the same percentage of weight, he'd weigh 325 pounds by May. I told him he shouldn't try to compete with me, and I think mommy agrees.

Everyone tells me they're proud of me that I've gained so much, but that doesn't make sense. I can't add to my stature just by thinking. But I am blessed and very thankful for all the help I've had. My doctors and nurses are so nice to me (except when they poke my little heels to test my blood), my family sure loves me (in fact, I've gotten lots of wonderful letters including one from my older cousin Lev and my other cousin Nora, who is only one day older than I am), and the hands of all the angels are so very comforting.

And I sure could use the comfort these days. In an effort to start breathing on my own and leave the ventilator behind, I've been getting steroid shots. It's supposed to help my lungs, but it makes me feel all funny inside. I don't really understand the feeling, I just know I'm restless. A friend said it's a strange feeling deep down between the bones and the muscles. So although I can't help but flail around and cry a lot, the settings on the ventilator are starting to go down a little bit and I do better at keeping my oxygen levels up.

By the way, my parents told me about something called a blog and said that people from all over the world are seeing the pictures of my family and reading my emails. I never knew I had friends from so many places! I do know about my good friend in Switzerland though. She wrote me a letter and asked if I wanted Swiss chocolate. My mom and dad told me to say yes and that I'll thank them later. I suspect some ulterior motives!

I love you all and I hope to meet you soon. If you come visit me, then I'll be able to put a face with your name.

Sunday, January 13, 2013

I can see!

My dad was right – mommy is just as beautiful as he said. Now I get to see her kind and loving face when she sings to me with her angel voice.

At first only my right eye opened, then my left eye opened half-way. But now I’m wide-eyed and ready to explore. But exploring will have to wait just a while longer. I’m working on proving to the doctors that I’m steady and stable so that they can focus on my breathing.

I've got my blood sugar under control for now, and I’m really enjoying this eating business. I hear that most of you only get to eat three meals a day, but I get to eat eight! Of course, each meal is only twelve cc’s of milk (that’s about half an ounce, by the way). And I’m not just doing well taking it in; I do a good job getting rid of it too.

It may seem like a normal thing for you, but it’s a big deal for me. I wasn't always so good at it though. I had to learn the hard way. The nurses had to help me the first few times. I didn't like it and the next time the nurse was changing me, she threatened that if I didn't poop, she’d give me a suppository. I didn't know what that word meant, but I knew what was coming. Before the nurse could spell NICU, I was making it happen. The nurse sure got a kick out of that, but it’s no laughing matter to me!

By the way, my picc line is gone. That’s a special tube that went into the vein in my arm all the way to my heart. It was important to have that line before I was getting fed through a tube in my mouth (that goes straight to my stomach), so that I could get all my nutrients and medication. But if I got an infection through it, it would hurt my heart. So it’s blessing that I don’t need it anymore, even though it was a miracle that I had it. Because my veins are so small, it was going to take a lot of work and a miracle to get it in me, but the nurse said it was the easiest picc line she’d ever put in!

The best part of this last week was when mommy picked me up for the first time and held me. I don’t know if you can remember how your mom used to hold you, but let me remind you how special it is. When she lifted me up, it was the closest I’ve been to her since I was still inside. I felt the warmth of her hands and the softness of her skin, and I thought at that moment that nothing could be better. That’s when she kissed me. After living in an incubator my whole life, having my mommy hold me and kiss me was just the best. It’s a special connection. I am so blessed that she loves me this much!

Thank you for your love and prayers for me and my little family. Daddy has been sick and I haven’t seen him for a while, but he’s getting better with your help! I love you all!


Friday, January 11, 2013


Lots of people ask if we are able to hold Marshall and talk to him.  Currently we can't hold him much as he is attached to an oscilator (a type of ventilator that is gentler on the lungs) which can't be moved, and makes holding difficult.  Tyler and I have both had a chance to hold him once, but only inside his incubator a couple inches above his bed.  We are able to touch him and hold his hand, but sometimes this can cause little Marshall to be overstimulated, which is evident when his O2 levels start dropping on the monitor.  The doctors and nurses call his care "cluster care".  Because premature babies are supposed to be still inside their moms, they aren't as ready for the stimulation that comes from loud noises, and being touched or moved.  So his care is done in clusters.  If the nurses need to prick his heel for a blood sugar level, and he needs to be fed and moved, they plan to do it all at once, to limit the amount of stimulation Marshall gets so that he isn't overstimulated.  We still get to talk to him lots, and sing to him, but are always aware of his oxygen levels, making sure he doesn't get too stressed.  

Saturday, January 5, 2013

I can't lie still any longer!

I'm ready to get moving. Let me tell you, an incubator, tubes, and wires do not make it easy. And don't get me started on the fentanyl! I guess I should explain...

Ever since that PDA closed my breathing has been more stable and I've been rolling over. Actually, because of my ventilator tube I can't yet roll over myself. The nurses help me make it onto my stomach. I enjoy it a lot more. It puts me in perfect position to do some push-ups and get a head start on crawling. But as soon as I started inching forward, the nurse gave me a dose of a fentanyl, which everybody knows is a strong sedative and pain-killer. How can anyone do push-ups with fentanyl flowing through their veins?!

So today, instead of crawling, I decided I'd just strengthen my core a bit with some leg lifts. Mommy got some pictures of it. She said people would laugh if they could see it. I'm not sure what to say to that, but what can I say - I like making people laugh! Take a look at the picture and video I've attached.

By the way, thank you all for your emails and messages I've received lately. I appreciate your love and concern for me and my little family. I'm sorry I haven't kept you up-to-date in the last couple of days, but there's good reason for that. Daddy has been sick and hasn't been able to come visit me for a few days, and it's his laptop I've been using. I miss him, and mommy tells me at least twice a day that he misses me a lot. I guess that explains why she takes so many pictures and videos of me lately!

Some of you have been asking for specifics, so if you're interested then read on. If you'd just be bored, then skip to the last paragraph.

I'm able to breath much better than before, and only have "episodes" occasionally when I try to focus on too many things at once (like being poked in the heel for the 20th time in a day, getting my diaper changed while I'm still going, and hearing all the beeps from the machine at the same time!). They say I have a distended bladder too, whatever that means. I don't think they're too worried about it yet. I've been gaining a lot of weight lately and now weigh 22 ounces, which is 8 more than when I was born!

My blood sugars are still out of balance, but I figure that everything can't go so smoothly. I have to keep the doctors and nurses on their feet somehow. And it doesn't seem to upset my parents as much as my breathing did last week.

Thank you all again for your prayers and support. Mommy said that everyone asks about me. I never knew I was so popular! She also told me that many of you have brought by dinner or have sent cards with kind words or have offered all sorts of help. I'm so grateful that you're helping to take care of them, as they do their best to take care of me. I love you all!


Daddy changes my diaper